UK – The need of a continued support

To read on Sense website:

When I’m gone

75% of disabled people and their families have no long term support plan. Families need help to plan for the future.


Many disabled people are supported by their families. Family members play a key role in enabling and empowering them, becoming experts in their care. Few families have felt able to put plans in place for the future.

  • 1.7 million disabled people are supported by their friends and families. 75% have no plan for the day that support is no longer available.
  • 67% of carers have profound fears about what will happen to their relative when they are no longer able to provide care.
  • Two thirds of local authorities are unaware of how many disabled adults in their area are currently being cared for by family and friends at home.
  • Only a quarter of councils routinely provide support to make contingency plans for future care.

What we’re calling for

We believe that disabled people and their families should be able to have confidence that they will always be well supported. We’re calling on national and local government to:

  • Create a duty to ensure that plans have been put in place
  • Support families to make plans for the future
  • Provide clear information about how the system works
  • Ensure quality specialist services are available
  • Provide enough funding for local areas
  • Provide more support to help families now

What we’re doing

Over the course of 2018, Sense will raise awareness of the issue locally and nationally to ensure that disabled people and their families get the support they need.

In February, we published our report, When I’m Gone. It explains the issue in detail, tells families’ personal stories and sets out our recommendations for change.

We have also produced a toolkit called Decisions to make, steps to take. It is aimed at disabled people and their families, to guide them through the process of making choices about the future.







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